She has been on various antibiotics and was even in "remission" for about 6 months with symptoms creeping back gradually.

She gets this horrible rash or bumps or whatever that bring with it lots of pain.

This pain is either in the muscle or joint. She says her whole arm (or leg) hurts. I have taken some pictures of these "bumps"

and was wondering if anyone would have a few minutes to take a look and give me their opinions (I know this is not a medical

diagnosis....I am just looking for further ideas, as nothing seems to be working). I could send you the pictures or I could set up a album on yahoo or something.

Any help would be greatly appreciated.

Thanks soo much!

orrn

I had joint-muscle pain for years
in almost every jount in my body
except in my shoulder scockets--

2 years ago I got this rash on both
of my shoulders- and within days
both of my shoulder felt
like they where out of there scockets

The pain was extreme and lasted about
8 months--rash was there the whole
time--
When the pain got better the rash
disappered at the same time--

I feel they where connected--
for sure

I have tried to find more info
on what it could be --but have
not found a definate answer--

I feel it is connected to lyme or
co infection--I think the tick that
bit me gave me the full load of
different germs--My lyme bruse
was a perfect bullseye -red- purple
and was better than any picture
I have seen of one--Lucky me--

I have had this skin rash to some
digree ever sence I got bit--
--Jay--

THis is making me nuts.

quote:

---

Originally posted by pattiecake:
Tree,
did you see the pictures? My bumps are just like that and itch. We are pretty sure its bartonella. What do you think? I just finished up an intense 4 weeks of biaxin/levaquin/flagyl and it was almost GONE and now within 3 days i am breaking out all over again!! Im still on meds. Do you think its a herx? Maybe I need rifampin instead of levaquin.

THis is making me nuts.

pattiecake

---

How long have these bumps been there???
because the longer the worse they get and bigger.

SEE A LITTLE ONE AND A BIG ONE.

I emailed her waiting for reply

http://www.ilads.org/burrascano_1102.html#barton

BARTONELLA

Bartonella henselae, the agent of cat scratch disease, has been found in Ixodid ticks and as a co-infection in patients with Lyme Disease. With co-infection, symptoms of Bartonella are almost impossible to distinguish from Lyme, but may include lymphadenopathy, splenomegaly, hepatomegaly, headache, encephalopathy, somnolence, flu-like malaise, weight loss, sore throat, and a papular or angiomatous rash. In acute cases, there can be hemolysis with anemia, high fever, weakened immune response, jaundice, abnormal liver enzymes, and myalgias. Endocarditis and myocarditis have been reported. More severe infections are associated with immune deficiency and possibly occurrence of opportunistic infections. As in Lyme Disease and Babesiosis, Bartonella may be transmitted to the fetus in the infected pregnant patient.

Diagnostic tests include serology, blood and CSF PCR, and biopsy of skin lesions and lymph nodes.

In the co-infected Lyme patient, eradication may be difficult. Many antibiotic agents have been reported to be effective, including cephalosporins, fluoroquinolones, erythromycins, gentamicin, rifampin and streptomycin. In practice, these patients seem to do best with a combination regimen that utilizes agents that can penetrate cells. Typical combinations include an erythromycin, plus a fluoroquinolone or rifampin. Treatment progress is most commonly assessed by PCR post treatment and serial titers.

quote:

---

Originally posted by pattiecake:
I dont have the big lumps under the skin just the red bite like bumps.
pc

---

Good luck with the rash!

I had to talk to everyone and their brother at the school! I AM EXHAUSTED!

Miraculously the first day of school her skin and pain were quite manageable. Hooray!!!!

To make matters worse her school just changed to a "balanced calenday", which means they start back to school sooner.

I am all for this, as I think kids lose alot during such long summer breaks, but her school does NOT have air conditioning!

Our temps here have been low to mid 90's. Of course the office at the school has air, imagine that! OK enough complaining (but thanks for listening).

Her boughts with these bumps started when she was about 2 years old. When she first starts breaking out she has horrible pain.

The bumps used to be only on her arms, legs and butt (now she has them on her chest and back-not bad, but..). This was how we were actually diagnosed.

When a 3 year old can't even sit up on Christmas morning, let alone get out of bed because of pain. When a 3 year old knows Santa has been there and can't even get up there is something wrong.

I found this site and got the name of a LLMD in our (general) area and made our appt. We were both diagnosed with LD.

She continued to have boughts with these bumps and the pain through her treatment, but they got fewer and farther between.

Then Dr. C in MO thought she was well enough to go off antibiotics after 2 years of lower doses of antibiotics (she would herx with these bumps and pain very easily).

She was off meds for about 6 months when her symptoms started creeping back. At our last visit he put her back on antibiotics and she started getting the bumps again.

At first they were cycling about every 4 weeks. They would go away and she would be good again for a couple weeks until the next cycle.

Then the cycles started getting closer and closer together until she wouldn't even be cleared up before she'd be getting new ones.

This last few months is the worst it's ever been. I feel so helpless with all this. I don't have a pediatrician here that knows anything or is willing to work with Dr. C.

And worst of all when I sent the pictures to Dr. C he said it could be a lyme rash, but looked more like bug bites to him!!!!!

He asked if she'd been out in the grass or something! AAAAAAHHHHH!!!!! I feel like I am in the twilight zone! With my daughter's life at stake.

He made no mention of Bartonella or anything and no other meds to try or what I should do. I just want to cry all the time.

Luckily I took her off the Ceftin she was on (low dose) and a couple days later she seems to be much better.

Her skin is clearing up and she didn't even want ibuprofen before school today(although she did have back pain when she woke up).

I think my sanity is slipping away. That is just the stuff with her.....I still have myself to deal with.

I had to leave work today cause I started crying and couldn't stop. I was hysterical! I couldn't even drive. I had to have my mom come pick me up and left my car at work. HELP!!!!!!!

I can't lose my job! That's our only health insurance not to mention income. Any suggestions????? Thanks for listening again!!!

I had to talk to everyone and their brother at the school! I AM EXHAUSTED!

Miraculously the first day of school her skin and pain were quite manageable. Hooray!!!!

To make matters worse her school just changed to a "balanced calenday", which means they start back to school sooner.

I am all for this, as I think kids lose alot during such long summer breaks, but her school does NOT have air conditioning!

Our temps here have been low to mid 90's. Of course the office at the school has air, imagine that! OK enough complaining (but thanks for listening).

Her boughts with these bumps started when she was about 2 years old. When she first starts breaking out she has horrible pain.

The bumps used to be only on her arms, legs and butt (now she has them on her chest and back-not bad, but..). This was how we were actually diagnosed.

When a 3 year old can't even sit up on Christmas morning, let alone get out of bed because of pain. When a 3 year old knows Santa has been there and can't even get up there is something wrong.

I found this site and got the name of a LLMD in our (general) area and made our appt. We were both diagnosed with LD.

She continued to have boughts with these bumps and the pain through her treatment, but they got fewer and farther between.

Then Dr. C in MO thought she was well enough to go off antibiotics after 2 years of lower doses of antibiotics (she would herx with these bumps and pain very easily).

She was off meds for about 6 months when her symptoms started creeping back. At our last visit he put her back on antibiotics and she started getting the bumps again.

At first they were cycling about every 4 weeks. They would go away and she would be good again for a couple weeks until the next cycle.

Then the cycles started getting closer and closer together until she wouldn't even be cleared up before she'd be getting new ones.

This last few months is the worst it's ever been. I feel so helpless with all this. I don't have a pediatrician here that knows anything or is willing to work with Dr. C.

And worst of all when I sent the pictures to Dr. C he said it could be a lyme rash, but looked more like bug bites to him!!!!!

He asked if she'd been out in the grass or something! AAAAAAHHHHH!!!!! I feel like I am in the twilight zone! With my daughter's life at stake.

He made no mention of Bartonella or anything and no other meds to try or what I should do. I just want to cry all the time.

Luckily I took her off the Ceftin she was on (low dose) and a couple days later she seems to be much better.

Her skin is clearing up and she didn't even want ibuprofen before school today(although she did have back pain when she woke up).

I think my sanity is slipping away. That is just the stuff with her.....I still have myself to deal with.

I had to leave work today cause I started crying and couldn't stop. I was hysterical! I couldn't even drive. I had to have my mom come pick me up and left my car at work. HELP!!!!!!!

I can't lose my job! That's our only health insurance not to mention income. Any suggestions????? Thanks for listening again!!!

The purpleish areas on the picture of her above (that treepatrol was nice enough to crop and post for me) are bumps that are healed up.

It looks to me (without seeing a larger picture) that it could be erythema nodosum but I could be wrong. (I am not a dermatologist.)

Erythema nodosum is a type of skin inflammation that results in reddish, painful, tender lumps most commonly located on the front of the legs. The swelling is caused by a special pattern of inflammation in the fatty layer of the skin. As they fade, they leave a temporary bruised appearance or may leave an indentation where the fatty layer may have been injured.

There are several scenarios for the outcome of erythema nodosum. Typically, these areas of nodular tenderness range in size from about a dime to a quarter and they may be tender and inflamed off and on for a period of weeks. They usually then resolve spontaneously, each one of the little areas of inflammation by shrinking down and then becoming flat rather than raised and inflamed. They leave a bruised appearance. Then, they resolve spontaneously completely. Other lesions can sometimes pop up elsewhere. This may occur for periods of weeks to months and then eventually goes away. However, chronic erythema nodosum that may last for years is another pattern. Chronic erythema nodosum, with intermittent recurrences, can occur with or without an underlying disease present.

What causes erythema nodosum?

Erythema nodosum may occur as an isolated condition or in association with other conditions. Conditions that are associated with erythema nodosum include medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease - Bartonella, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases (Crohn's disease and ulcerative colitis), and normal pregnancy.

How is erythema nodosum treated?

Erythema nodosum is initially managed by identifying and treating any underlying condition present. Simultaneously, treatment is directed toward the erythema nodosum. Treatments for erythema nodosum include antiinflammatory drugs, and cortisone by mouth or injection. Treatment must be customized for the particular patient and conditions present. It is important to note that erythema nodosum, while annoying, does not threaten internal organs and the long-term outlook is generally very good.

~~~~~~
While the information above (from an internet medical source) does say that it could be treated with steroids, I would use caution about this with Lyme and consult a dermatologist AND your LLMD prior to any changes in her treatment.

quote:

---

Originally posted by imanurse:
Hi orrn,

It looks to me (without seeing a larger picture) that it could be erythema nodosum but I could be wrong. (I am not a dermatologist.)

Erythema nodosum is a type of skin inflammation that results in reddish, painful, tender lumps most commonly located on the front of the legs. The swelling is caused by a special pattern of inflammation in the fatty layer of the skin. As they fade, they leave a temporary bruised appearance or may leave an indentation where the fatty layer may have been injured.

There are several scenarios for the outcome of erythema nodosum. Typically, these areas of nodular tenderness range in size from about a dime to a quarter and they may be tender and inflamed off and on for a period of weeks. They usually then resolve spontaneously, each one of the little areas of inflammation by shrinking down and then becoming flat rather than raised and inflamed. They leave a bruised appearance. Then, they resolve spontaneously completely. Other lesions can sometimes pop up elsewhere. This may occur for periods of weeks to months and then eventually goes away. However, chronic erythema nodosum that may last for years is another pattern. Chronic erythema nodosum, with intermittent recurrences, can occur with or without an underlying disease present.

What causes erythema nodosum?

Erythema nodosum may occur as an isolated condition or in association with other conditions. Conditions that are associated with erythema nodosum include medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease - Bartonella, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases (Crohn's disease and ulcerative colitis), and normal pregnancy.

How is erythema nodosum treated?

Erythema nodosum is initially managed by identifying and treating any underlying condition present. Simultaneously, treatment is directed toward the erythema nodosum. Treatments for erythema nodosum include antiinflammatory drugs, and cortisone by mouth or injection. Treatment must be customized for the particular patient and conditions present. It is important to note that erythema nodosum, while annoying, does not threaten internal organs and the long-term outlook is generally very good.

~~~~~~
While the information above (from an internet medical source) does say that it could be treated with steroids, I would use caution about this with Lyme and consult a dermatologist AND your LLMD prior to any changes in her treatment.

---

Reading
http://www.umm.edu/dermatology-info/enodo.htm
What is erythema nodosum?
Erythema nodosum is characterized by tender, red bumps, usually found on the shins. Quite often, erythema nodosum is not a separate disease, but, rather, a sign of some other disease, or of a sensitivity to a drug.

Diseases that can cause erythema nodosum:

streptococcal infections
sarcoidosis (inflammation of the lymph nodes and other organs)
leprosy
coccidioidomycosis (infection of the upper respiratory tract and lungs)
histoplasmosis (an infectious pulmonary disease)
tuberculosis
psittacosis (a flu-like disease)
lymphogranuloma venereum (a venereal infection)
ulcerative colitis

http://www.emedicinehealth.com/articles/17621-8.asp
http://www.nlm.nih.gov/medlineplus/ency/article/000881.htm
:::::::::::::::
::::::::::
::::::::

What causes erythema nodosum?

Erythema nodosum may occur as an isolated condition or in association with other conditions. Conditions that are associated with erythema nodosum include medications (sulfa-related drugs, birth control pills, estrogens), strep throat, Cat scratch disease, fungal diseases, infectious mononucleosis, sarcoidosis, Behcet's disease, inflammatory bowel diseases (Crohn's disease and ulcerative colitis), and normal pregnancy.
http://www.medicinenet.com/erythema_nodosum/article.htm

:::::::::::::
::::::::
::::

Underlying conditions list: The list of possible underlying conditions mentioned in various sources for Erythema nodosum includes:

Pregnancy
Bacterial infection LYME TICK ETC ?
Viral infection BUGBITE TICK ETC?
Fungal infection
Protozoal infection BUGBITE TICK ETC?
Rickettsial infectionBUGBITE TICK ETC?
Streptococcus
Tuberculosis
Sarcoidosis
Behcet's disease
Toxoplasmosis
Chlamydial infection
Yersinia
LeptospirosisANOTHER SPIROCHETE COUSIN TO LYME
Leprosy
EBV
Histoplasmosis
Coccidiomycosis
Blastomycocis
Lymphoma
Leukemia
Adverse reaction to certain medications
Erythema nodosum as a complication: Other conditions that might have Erythema nodosum as a complication might be potential underlying conditions. The list of conditions listing Erythema nodosum as a complication includes:
http://www.wrongdiagnosis.com/y/yersiniosis/intro.htm

http://www.wrongdiagnosis.com/e/erythema_nodosum/underly.htm

Maybe you should email these pics or call say Dr B in NY or Dr J in conn and show them these pics. if you need addresses of either one email me and I send then to you orrn.

It deffinatley is cycling protosoa cycles and so does lyme.

I have had many skin problems that can be attributed to Lyme, but nothing like in the picture of your daughter.

Your picture does look like an allergic reaction to either chiggars or bedbugs- or some other blood sucking insect, especially since the small on has what looks like an open center, with and irregular wheal of rednessaround it - and when they heal they leave a scar.

The only place I've seen swellings like that was on 2 people allergic to bedbug bites
in Mexico. The lesions were huge like in your picture, red hot and swollen, and HURT ..and when they finally healed - took at least 3 months - there were purplish white scars in those locations. My friends later reported that those areas would'reactivate' and itch slightly months after they were healed.

Have you taken her to a GOOD dermatologist - familiar with exotic reactions (because most dermas in my opinion always opt for defaulting to immune problems.)

While I appreciate all the ideas I can get, I don't think these have anything to do with bugs.

She has literally been getting these for years! We have lived at different places during this time also.

They are almost always just on her extremities and bottom (until the last couple of months) and she has such joint pain she cannot even bend (like in her hips or knees) and has to be carried.

They can come and go so quickly. One day she won't have any, the next she will with the joint pain. One day she will have them and the pain, then the next day she won't and have no (or very little) pain in her joints.

It is very mysterious, but I knew you guys on here might have some different ideas for me. Thanks for all your information.

orrn